Patients must be their own advocates

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Remarkable things are happening in health care. But if you’re a consumer — particularly if you’re ill and need something more than medicine’s standard bag of tricks — the sobering fact is that it’s up to you, the patient, to take charge.

Each year, a quarter-million people need to have one of the four valves in their hearts repaired or replaced. For most, that means open heart surgery — a grueling operation. The surgeon makes a cut straight into the breastbone, cracking the ribs, opening up the chest and exposing the heart. The surgery takes two to five hours. It takes another six weeks for the bone to heal. The risks are high: blood clots, infection, kidney failure, death. All can easily occur, especially if you’re older.

Patient X, age 86, found himself increasingly tired and two years ago his doctors delivered the grim diagnosis: His aortic valve was failing. The valve had to be replaced. He thought about it for awhile and decided no. He’d seen too many friends become victims of strokes, their last days a kind of mental purgatory. Valve and age notwithstanding, he was healthy, independent, and sharp of mind. If he was going to go, he’d rather go that way.

By chance, his wife showed him a news story. Researchers were testing a markedly different approach: a valve that could be inserted without surgery at all, snaked up to the heart via an artery. It meant no cutting, no extended healing time, and far less risk of stroke.

He tracked down physicians investigating the new device at Massachusetts General Hospital. One appointment led to more and soon he found himself under consideration as a subject. Then came bad news. The valves being tested at MGH came in only a few sizes, all too small. “My heart is just too big,” he said, making a joke to cover his disappointment.

He heard of a similar set of trials across town at Beth Israel Deaconess Medical Center, and so went through the process again. This time the valve under consideration would fit, but last spring he received a call that left him devastated: He was rejected. Human experimentation is a dicey proposition; protocol is that it should only be done when there is no realistic alternative. Even though he might not want it, Patient X’s body could tolerate open heart surgery. “I’m too healthy,” he said, another joke to cover another disappointment. He pushed back and some hope was offered. After the first round of trials, the pool of candidates could be broadened. He might qualify then.

Meanwhile, though, his aortic valve was failing. Three times over the summer he suffered cardiac events, in one case falling unconscious to the floor of his garage. He survived each incident, but it was clear that time was running short.

Patient X, age 86, found himself increasingly tired and two years ago his doctors delivered the grim diagnosis.

Just before Christmas, his doctors told him the second round had started and he was on the list. There was a long wait as an independent panel of physicians reviewed his case. Jan. 22 — his 88th birthday as it turned out — found him under general anesthesia as the procedure commenced. Four hours later he returned to consciousness. Full recovery, doctors told him, would take weeks. His heart still had to adjust to not straining as hard as it had been, but already he felt better. “Elated,” he said, although that sentiment may have been more because the long saga itself was coming to a close.

Yet while Patient X’s success should be cheered, it’s worrisome as well, for the obstacles he faced could confront any of us. As good as it is, the US health care system is vast and complicated and can too often lose sight of the individual. That means it’s patients themselves who have to seize the initiative — to ask questions, to challenge, and to be assertive — which, in turn, can seem impertinent, annoying or perhaps (as was sometimes the case with Patient X) quixotic. It means pressing forward even when seemingly defeated, never taking no for a final answer. It’s unfair, but it’s true: Oftentimes the health care we receive is up to us. Dogged persistence pays off, a lesson with particular resonance for me. Patient X is my father.